cara615

I'm waiting for our results from 23andme! I sent it in last week

Awesome advice LLM and you can tell I am in info overload and its because I was recently added to all the FB groups! its too much! We see our new Dr on the 19th and I have a list of infections I want ds tested for. H.Pylori comes up first for me for a couple fo reasons. 1) ds was on prilosec for the 1st year of his life 2) he complains of stomach aches after he eats often. Then I would like to rule out myco and some of the other common infections. As for Lyme, I don't know how much the test is but I will consider it. I would like to rule it out. I don't think ds has it but I will admit that we love hiking and have been on many trails in the south in their short lives. We also summer on Long Island eavery year for 2 weeks and they have been to Fire Island. So who knows? It could be possible. Do I think he really has it? No because he doesn't have any classic symptoms. But like you said a lot of those folks on the FB group will pormise you that your kid has it even if 10 tests come back negative for it! lol Again, thank you for your even handedness and sense of balance in all of this. I love this forum and everyone in it.

All very interesting! We give L'glutamine but now i am considering removing it. I have given ds taurine and it made him tic more so that is not an option. i have given GABA supp in the past (which they say is useless) and it has had an effect on both me and my sons. For me, it calms me down tremendously and for my sons, it helps them grow! My boys are extremely small and have never been on a growth chart. Their father is 5'3" and I am 5'0" and when ever i give them GABA before bed (I do it in bursts for 4 days at a time) they grow 1/4 inch. They say that GABA helps stimulate the pitutary to release HgH. So maybe GABA supp doesn't increase the overall GABA in the body but it certainly does something!

Ok so when you do a lot of reading and reasearch you begin to get the "google syndrome" of "yep! that is me!!" But I need some opinions. Here are my son's PANDAS symtoms in order of severeness: TICS!!! Emotional lability Stomach aches Mouthing things (fingers mostly) Occasional headache During an exacerbation we did see some ADHD and OCD but those behaviors have pretty much resolved at this point. I would say that for the most part its the TICS that are the biggest symptom with the others being pretty occasional and not consistent. The headaches are seldom at this point and they were never very frequent. My son does not flare during a full moon. But what I did hear anecdotally was that mouthing objects is a clue to parasites? We had a comprehensive stool sample with no sign of parasites. I was told those stool samples rarely find the parasites because they are in the biofilm and the biofilm needs to be broken down. Is this true? Do these symtoms sound like there may be Lyme co-infections or parasites? i plan on doing all the tests to find out what is going on but I wanted to hear if any of you think that these symptoms may be indicative of other infections besides Strep. Thanks so much!

Hi! I know some of you may be on this group. I was added by a friend recently and I am noticing that there are some people that feel that Lyme is the underlying cause of MOST cases of PANDAS/PANS. They think its the root cause of the immune system disregulation. I never considered Lyme to be an issue for us as ds only has tics. But I plan on ruling it out. Any thoughts on how prevalent you all think Lyme and co-infections of Lyme really is? Is the Igenx test the ONLY one that is accurate? I just want to make sure I get some other opinions on this as that FB group is scaring me a little. Thanks

I will!! Thanks for all this amazing info!

So just an FYI for those newly diagnosed that may be getting an rx from their pediatrician or another doctor that has limited experience with PANDAS. The normal dosage of abx is not usually going to be effective (at least in our case this was true - so I am mentioning something anecdoatal here). From what I have researched, Dr. T recommends 10-12mgs/kg of azithromyacin to start with. My ds has been on 5mg/kg and although we saw results, over time the results plateaued and we experienced some flares that were difficult to resolve on this dosage. Once I increased to 10mgs/kg, we are seeing resolution. i have also inreased probiotics to counteract the increase in abx as well. Just thought I would mention this here as a reference point. I know that some have had success with changing up the abx but maybe a higher dosage was all that was needed. Again, this is just my experience, I am in no way advocating high doses of abx to every child with PANDAS - I realize that every situation is completely unique.

Thanks 3bmom! I will pass that info on to my friend. her ds has been suffering from seizures since 9months old. She has been on anti seizure medication for a long time. She is 9 now. the thing that got me thinking PANDAS was that she feels the need for frequent urination. They checked for a UTI but came back negative. The frequent urination happens during the day and at night too.....

That is what I was thinking too. Now, to get our Pedi to refill at the higher dose before we get in to see our new PANDAS dr. on the 19th.......

Could seizures be caused by PANDAS in the absence of other symptoms? Asking about a friend's daughter.......

Update: day three on 150mgs of azithro and tics are resolving. He needed a higher dose.

All the soy my son gets is organic. I speicifically buy foods that say non GMO project on them. This is why my food bill is over $1,500 a month!

You may want to consider running an ALCAT test. This tests for food and chemical sensitivities/intolerances. Then you can really know what to remove from the diet instead of just guessing. I will say that gluten/dairy and corn are the three bigest culprits. Soy is up there too but since my ds only had a mild sensitivity to it, we keep in in his diet in small amounts. If i removed EVERYTHING that was on the ALCAT test in the severe/moderate and mild columns, my son would be eating air.

I will tell you this. My ds had his first real exacerbation last May (he mad mild symptoms before this) and at the time we did not suspect PANDAS. I decided to heal his gut through diet and supps. We went GFCF, corn free and low sugar. We killed off yeast and partially addressed methylation. Within 3 months, I had him back to baseline. This was without antibiotics or any other wetern medication. Then in November during his 2nd exacerbation, we discovered the strep trigger and PANDAS dx was given. So, I can attest that the diet changes, at least for our son were integral in helping reduce his symptoms. Fankly, the effects were dramatic.

Excellent question!! We had the same one!! Whey is milk derived. I am not sure what she really meant as it seems condraticting.We are dairy free and increase glutathione by giving our ds NAC. However, she mentioned that NAC should be given 400-500mgs per day and we were giving 1200mgs! i backed down as I don't want to create a situation where his body stops producing glutathione on its own! She said that could be an issue. For us, I wouldn't add when into his diet as I KNOW he has a dairy intolerance from his ALCAT test.

So I was listening to Radio Pandas with Dr. T the other night and a women called in from Seattle with a very interesting piece of information. She said that she is talking to a lot of Moms that report that THEY are the triggers for their PANDAS kids. Meaning that THEY have an infection and once treated, their child/s symtoms lessen or resolve. I find this so interesting because I am convinced that ds tics more when he is around me. I was on a business trip last month for 4 days and dh said that ds was barely ticcing at all (granted my dh is not as keen to the tics as I am) but when I returned ds's tics increased and he went into another flare. I really think i am walking around with an infection. once I see the new dr. I am going to pose this hypothesis to him and get myself tested. I know I am not a strep carrier because I have tested neg for strep many times. But what else do I have living inside of me? interesting fact about me: I have Achalasia. It took 5 years ot happen but by the time I was 21 all of the nerves in my esophagus degernerated and my lower esophageal sphincter closed up and remained in spasm. I could not eat or drink without regurgitating because I let it go on for so long without treatment (I was a crazy kid). Anyway, I had to have a baloon diliation done on my sphincter so food could go down via gravity. I lost my peristalsis permanently. 14 years later I had a Heller Myotomy to permanently fix my sphincter that became tight over the years again. Now, the cause for Achalasia is unknown. There have been hypothesis' out there of autoimmune origins, genetic origins and viral origins. Nothing has been conclusive. Knowing what I know now, I believe I had a virus or bacteria that caused an autoimmune response in my body to attack my esophageal nerves. the good thing is that it seemed to stop at the esophagis and did not attack or destroy anything else. But WHY???? And how is this related to my PANDAS son!!!!

Tell me more about this nighttime wetting!!! DS (non-pandas) has trouble making it through the night. But he never has been able to. I chalk it up to the fact that his bladder is not big enough. Our PANDAS son has never had a nighttime accident. My question to you rowingmom is did your ds make it through the night at one time and then regress or was he never able to make it through the night and should I be concerned. My ds's are 6. Non PANDAS ds has no other symptoms that I would ever consider to be PANDAS other than not being able to stay dry the whole night through. We wake him in the middle of the night to go to the bathroom and it has worked for us. We are considering an enurisis alarm... EDITED: From what I have read - it says it's usually a new onset of bedwetting. In our case he has never been able to go the whole night dry. During the day he is fine and does not have any increased frequency of peeing.

I have done almost everything under the sun for natural supps for tics. Currently we are adding glutamine for the gut lining, NAC for detox, Grapefruit seed extract for maintenance of yeast, Methyl B complex 2x a week, essential oils for inflammation and turmeric for gut strength. in addition we are GFCF , corn free and low sugar. We have tried, mag, taurine, 5HTP, tic tamer, zinc, you name it and it only made things worse for him. My son is very sensitive.

We are using Ther-Biotic Detox right now. Its 50bill per cap but I give him a cap and a half!

Ok I am sure no one wants to give advice on dosing. i don't blame you either. After some research I was able to notice that there is a rule of thumb among PANDAS docs with azithro and its 10mgs per kg. My son is 16kg so that would mean he could tolerate a dose of 160mg. So i gave him 150mg (double what he has been receiving) for 2 days. It seems like his tics are decreasing. He is still a little hyper but we are seeing a reduction in tics. Maybe I am on to something. I will continue for one more day and then drop back to the 75mgs. I have an appointment with our new Dr. in 3 weeks. His name is Dr. Bradstreet and he is in Buford GA. His specialty is hard to treat disorders (i.e. PANDAS and Autism). He field is immunology. I hope by increasing the probiotics, and this jolt of higher abx we can see some resolution of this current flare.

First I want to aplogize for my prolific posting lately. Y'all must be so sick of me! Ok here is my situation. My son is 6 and weights 36lbs (he is little). He has been on Azithro 75mgs since Dec 2013. We saw great resolution of his tics from the episode he had in the middle of Nov when he tested pos for strep. We even saw titres come down. However, in Jan and now in Feb he has been flaring. Nothing too intense. He is still funtioning in school, just a little more talkative, a little more energetic and more tics. I seem to think his dose of Azithro is not high enough. So yesterday I doubled up just to see and his tics increased a little right after I gave him his 2nd dose. This tells me there was some die off (right?) So, should I double up one more day and then back off or should I just wait till I get in to see our new PANDAS specialist. The one I was currently seeing just does not know enough about PANDAS unfortunately and just wants me to pay her $220 a session for her to do nothing. My question is, is 150mgs too high for a 36lb boy? I don't want to put him in any danger at all and I am scared to be playing doctor like this. But I have spoken to a couple of people now that have their kids on 250mgs of azithro and they are only 10-15lbs more than my son. Thoughts on this?

so if someon has coxackie then what? PANDAS symptoms forever?

Is anyone aware of infections (bacterial or viral) that don't currently have a treatment? I know we use abx for the bacterial ones and there are antivirals and herbals that can treat viruses but does anyone have a child with an infection that can't be treated? I ask becuase our Pedi thinks that there are some infections out there without treatments.....not sure which ones. I have asked her to elaborate on this.

We use Ther-biotic detox - 50bill. At the conference this weekend Dr. Bhakta recommended Orthomolecular Probiotic. I looked it up and there is one with 225 bill CFU's. i ordered it because it comes in a powder packet and does not need to be refrigerated. You can add as much as you want and not give all 225 in one shot (mix it in applesauce). The key is to avoid the strep strain. Dr. Bhakta says that is NOT GOOD for kids that have PANDAS. Another thing is that the probiotics must be rotated. So we are moving from the Ther-biotic detox to the Orthomolecular once it arrives in the mail

No, it improved significantly. Sorry i did not specify which way it went